Sunday, October 23, 2011

October.....my favorite month of the year!

Dear friends and family,

This month is going by so fast. We just spent a long weekend with our Amish friends and the kids had a blast. We had so much good food and fun with Ken and Colleen. They have six children now and they own a party supply business. Good times to be had with all.

Shipshewana, Indiana is a breath of fresh air and good for the soul. No electricity, no TV and no Internet for awhile was refreshing. We tried all of Colleen's great recipes and even ate out a couple of times. The kids played on the wiggle racers, roller blades and took the pony and cart for a ride.

I have developed something called Uticaria over the last several weeks and I would ask for your prayers. It has been difficult with my eyes swelling to see and function 100%. I am on Prednisone, Pepcid and Zyrtec. I went to a doctor that only sees patients without insurance and for $58 I had an office visit and left with three prescriptions. It was so easy and unexpected. I usually have to pay $125 up front just to see the Dr. I may have to drive back to Shipshewana again! I am so much better but still not able to stop taking the medication.

Two of the sweetest things happened this weekend......last night Brody covered me up with his Toy Story blanket and tonight he tapped the bed for Ian to come sleep with him. Sweet child he is.

Curls and Pearls will open on January 3rd at 502 Blount Ave., Guntersville, AL 35976. Our new number will be 256.960.1575. We are so excited about getting to work together and look forward to meeting so many new people. Let the Griffin Adventures begin......

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Me and Brody

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Sweet Brody

praying when he was little

Who's Brody?

Our youngest son Brody has Fragile X, Autism, sensory processing disorder and ADHD. Brody is a forever child and is nonverbal. He uses about 40 signs to communicate and is a very happy child. He love television and movies as well as internet on the computer. Each day with Brody is a gift.

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Our "journey" necklace... Each day we make a concious decision to live intentional and each day is different just like each bead on this necklace is different. Enjoy your journey.

In loving memory of Shirley Griffin

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Brody and his service dog Millo

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The Top Ten Things You Should Know About Fragile X Syndrome

By Mary Beth Langan and Sally Nantais

1. It’s genetic.2. If a woman is a carrier, she has a 50/50 chance of passing it on to her son(s) or daughter(s). 1 in 100 to 200 women are carriers **.3. If a man is a carrier he will pass it only to his daughter(s), and they will only be carriers. 1 in 800 men are carriers.4. Fragile X Syndrome does not discriminate; it doesn’t care which ethnic group you belong to.5. Fragile X Syndrome is a spectrum disorder. Symptoms may vary from mild learning disabilities (including shyness and social anxiety) to severe cognitive impairment (mental retardation).6. Premature Ovarian Failure, more commonly known as early menopause, is a condition that affects 20-28% of the female FXS carrier population.7. Fragile X-associated Tremor/Ataxia Syndrome (FXTAS), discovered in 2001, is a neurological disorder that can involve tremors, balance irregularities, difficulty walking and dementia which sadly is often misdiagnosed as Parkinson's and/or Alzheimer’s. This condition is present in some older FXS carriers (typically after the age of fifty), usually in males but FXTAS can also affect female carriers.8. There are minor physical traits noted in many persons with Fragile X Syndrome, but not in all. These are traits which may also be present within the typical population, nothing unique which would necessarily indicate FXS testing is necessary for your child.9. When testing for Fragile X Syndrome (FXS), it is critical that the correct tests are ordered – the Fragile X DNA (Southern Blot) and PCR analysis. Inaccurate results occur far too often with the generic chromosomal panel. Test for FXS to obtain a diagnosis or to rule it out. If you don’t have what may be the correct diagnosis of FXS, then you will never be aware of improved treatments or the cure when it’s found.10. Where to go for the most accurate and up-to-date information on fragile X syndrome:http://www.fragilex.org/, the National Fragile X Foundationhttp://www.fraxa.org/, Fraxa Research Foundationhttp://www.conquerfragilex.org/, Conquer Fragile X Foundation** American Academy of Family Physicians, News and Publications, Vol. 72/No. 1 (July 1, 2005) http://www.aafp.org/afp/20050701/111.htmlMary Beth Langan and Sally Nantais are both Fragile X Syndrome carriers; each has a son with Fragile X Syndrome. They can be contacted at mblangan@hotmail.com and sally_nada@juno.com